Understanding the Experience of Stigma for Parents of Children with Autism Spectrum Disorder and the Role Stigma Plays in Families’ Lives

• Published in: Journal of autism and developmental disorders Vol. 46; no. 3; pp. 942 - 953
• Main Authors: Kinnear, Sydney H., Link, Bruce G., Ballan, Michelle S., Fischbach, Ruth L.
• Format: Journal Article
• Language: English
• Published: New York Springer US 01.03.2016; Springer; Springer Nature B.V
• Subjects: Adolescent; Adult; Aged; Analysis; Attitudes toward Disabilities; Autism; Autism Spectrum Disorder - psychology; Autism Spectrum Disorders; Autistic children; Behavior; Behavioral Science and Psychology; Care and treatment; Child; Child and School Psychology; Child Rearing; Child, Preschool; Children; Children & youth; Children with disabilities; Complications and side effects; Coping; Departments; Disability; Emotions; Etiology; Families & family life; Family (Sociological Unit); Family Relations - psychology; Female; Health aspects; Humans; Male; Middle Aged; Models, Psychological; Negative Attitudes; Neurosciences; Original Paper; Parents; Parents & parenting; Parents - psychology; Pediatrics; Perceptions; Pervasive Developmental Disorders; Predictor Variables; Psychology; Public Health; Rejection; Research methodology; Social Bias; Social Isolation; Social Stigma; Social work; Sociology; Statistical Analysis; Statistical Significance; Stereotypes; Stigma; Stigma (Social psychology); Stigmas (botany); Symptoms (Individual Disorders); Voluntary Agencies; New York; United States > US; Rejection; Discrimination; Stigma; Exclusion; Stereotyping; Scales; Regression analysis; Autism spectrum disorder
• ISSN: 0162-3257; 1573-3432
• DOI: 10.1007/s10803-015-2637-9

Stigma is widely perceived in the lives of families with autism spectrum disorder (ASD) yet large, systematic studies have not been undertaken. Following Link and Phelan’s (Ann Rev Sociol 27:363–385, 2001 ) model, this study of 502 Simons Simplex Collection families details how different factors contribute to stigma and how each appears to increase the overall difficulty of raising a child with ASD. The model begins with the child’s behavioral symptoms and then specifies stigma processes of stereotyping, rejection, and exclusion. Autism behaviors contribute both to the difficulty families experience raising a child with autism and to the stigma processes associated with those behaviors. Stigma also plays a significant role (.282, p  < .001) in predicting how difficult life is overall for parents.